ughh...i hate being sick

[LisaMarie]

I am finally down to 20 mg of pred daily and i start sweling in my joints only on my left...throats red...right sinus is so swollen the sinus wash shot back out at me this am ....so WG wanted labs this am ...coughing and blowing out yellow shining mucuous ...ughhh.....my bones ache so bad i wannt throw something ....labs are so-so but it looks like i make have a uti to boot.....plus i am having a hard time breathing again....so here i sit and wait for a call from the doc to see if he wants a chest x ray too...my old is in play offs for state high school foot ball and there is no way I can go to the game now ...since i got out of the hospital...all my activities have been limited.....i have to wear a mask everywhere....on O2 if I am out and about.....my last xray was better but not clear ...so I am hoping i am not relapsing again....have a deep seated feeling in my gut that that nastey dog has found his way to my lungs and my last near death experience was more than just some funky fungus.....i don't want to be sick over the holidays this is my time to bake and make candies......I barely have the energy to cook dinner after working a few hours at work...i just wanna scream.....and cry ...I truly hate this damn disease......:predrage:
Doc want me to increase my pred back to 40 mg ...i don't want too...but it is what it is....thanks for letting me vent.....i need some chocolate or a milk dud...anyone know where i can find some fast......:sad:

[elephant]

LIsaMarie, I went through the same thing about 18 months ago, was down at 20 and they wanted me up to 40 mg and then I tried to negotiate, I said 30 and the doc called back, "No!" Get on 40 now. That was right before they found the lung nodule....I was starting to feel like I was going down hill....then two weeks after that I had lung surgery and then they upped it to 60 mg of Prednisone. It's a temporary fix to get the inflammation down, but it won't stop the fire!

[pberggren1]

Lisa Marie,

You know your body best and when you have that gut feeling going it is usually right. I would have another CXR as well. What about your recent blood work? From your symptoms it sure sounds like it could be a flare. I'm sorry you are going through such a rough time.

[Jack]

None of this is sounding too great is it? :(
I would be assuming that it was Wegeners before anything else and looking for some fast treatment. I know it is a pain when you have to take backward steps, but that is the nature of the beast and you will only make progress again once you have got this episode sorted.

[Sangye]

Oh Lisa Marie, your post made me tear up. I can sure relate to that frustration and fear. Wish I could come there and give you a big hug. Let yourself have a good cry. What are they going to do about the immunosuppressant? Sounds like they need to get that working better.

[LisaMarie]

thanks for the support i slept from 3:30 yesterday til 8am with a few inturptions...still feel like crappy but no fever more on my right side of my sinus then left...may have CT.done on Monday.. ..started my increase yesterday....if i start cellcept now i have to have all the docs talk....WG doc plans on starting on the 10th of December....well i gonna pick some necessities then go back to bed....i have a 15 yr old here to help with the kids that needs driving hours so she will drive us and my kids want me to use the racecart as they call it...we will see...lol don't wanna knock anything or anyone done...lol

[JanW]

LisaMarie -- wishing you the best, and hope that they get you on something that works for you soon. I am living proof that the right person on the right drug is the best bet for success and living a relatively normal life with this disease.

[LisaMarie]

ok guys start praying ...i slept most of the day ....coughed up 4 large mucous plugs....my bronch's feel better ...not as much spasms...so by my book I am better ...we will see if the doctor agrees tomorrow....wish me luck .....i don't want to spend the holidays in the hospital....thanks again for letting me vent....my oldest son football team made state finals...game is the day after thanksgiving....at the dome in st louis,mo...wanna go but my chance are pretty slim at this point and time ....wish me luck pleading my case ...it is the first time since the 70's our small town has made it to state....so it's a big deal....hope you all have a great holiday

[pberggren1]

That is great Lisa Marie about your son. You must be able to breathe better after coughing up those plugs or chunks. I forget, did they do a chest x-ray or CT scan? Do you have lung involvement right now? I hope you are able to get out of the hospital soon and are able to enjoy the holidays with your family.

[elephant]

LIsaMarie if you feel better then that is a good sign...your listening to your gut feelings....Keep us posted!

[Sangye]

I hope that means you're turning the corner, Lisa Marie.

[LisaMarie]

ok I sit and wait at work for the doc to call back...no UTI per culture ...so that is good....Doc is suppose to decide today whether to xray or CT then whether I have to go to the hospital to be admitted before I go out of control again...I think we caught it in time and truly feel it is WG trying to flare...Juey is still out whether I have it in my Lungs and with out a biopsy....until there is significant damage done by WG I may not get anyone to confirm to deny lung invovlement....still have the horrid cough and sinus crud ...but no fever and once i increased my pred my left side swelling went down some....:predrage:.....so that means I am stuck at 40 mg for now....keep ya ll posted

[elephant]

Your staying on top of it LisaMarie and that is the most important thing!

[LisaMarie]

just finished watching my son's team play in the show me bowl abd they won...tight game 21-20 final score...wishi could have been there....but atleast he knows i watched the game and was there in his heart...i'm one proud mama
:w00t:

[pberggren1]

That is awesome they won. Congratulations! At least you have something to cheer about today.

[LisaMarie]

yep yep pretty happy...mad at doc but happy about son.....oh by the way all tshirts and sweatshirts are 50% off for weggies united til midnight pacific time...i just ordered 6 hoodies for our youth...and free shipping whoo hoo

[elephant]

LisaMarie, wonderful about your son's team! How are you feeling health wise?

[LisaMarie]

tired and flaring should start cellceptsoon see lung doc on 12/2
then WG on 12/10 got flare that minick a cold so now on antibotic avelox just to make sure i am not hospital bound ...i hope they find a combo that works for me i am supose to start cytoxin again...ugh ...but k try to focus on the positive and enjoy what i can and rest as much as possible .....baby steps

[elephant]

LIsaMarie is the WG in your lungs? Are you having continuous sinus drainage? Headache? Nose Bleeds? Stuffiness? Joint Pain? Just wondering where your at in this journey.

[terrilyn18]

Hi everyone, I haven't been on in a while. Joe was doing really well. We sold our home and are in Va. at our youngest daughters home. He has really good days and really bad days. My question is about joint pain.It gets so bad it puts him down. His shoulder and hand get really bad. His hand was swollen. They took fluid from his elbow. They said it was gout. They checked for clouts. He was doing better. for three days they increased his pred to 20 then back down to 5mg. The only thing that helps the pain is Alieve. He is not to take it very often because of his kidneys. Any other suggestions?

[elephant]

Sounds like the wegeners is not controled terrilyn18. Besides the prednisone is he taking anything esle to keep the WG underwraps? I can't remember does he see a Wegeners specialist?

[Sangye]

Ditto what Elephant said.

[terrilyn18]

Yes Joe is taking azathioprine 50mg 3 tablets a day. Yes he is seeing a WG specialist in Pittsburgh. If we decide to stay in Va. she will help us find someone here .His blood work shows he is holding steady. He gets it done every two weeks. We have to see the WG spealist in Jan along with the kidney and heart doctor. They all felt he could make the trip for the Holidays. They have given him several things for pain. Vicodin and other kidney friendly meds. The kidney doctor told me if he gets really bad give him the alieve, but not to often. They all say it is from the meds more than the WG. His doctor for the WG came to Pgh from the cleveland clinic. He still gets tired out. It has been really alot ofstress lately. Our house sold in three weeks we then had 26 days to get out. We spent three and a half weeks at an extended stay so we could get all the doctors and test before we left. Now we are in Stafford with our daughter. He had aplan to get everything we kept in storage here and get me here.I know he is preparing for the worst. I told him to fight because i need him. Some days he does other days he almost gives up. Then he makes plans for next summers vacation. I know it is hard for him on the days he doesn't feel well he gets down and wonders if he will ever feel better. Our children have each delt with it in different ways. Well I feel better for getting that all out. Thanks for being here.
Linda[terrilyn18]:ohmy:

[Sangye]

Linda, I don't know of any Wegs specialists in Pittsburgh. Are you sure it's not just a regular rheumy? S/he should see hundreds of Weggies.

I'm skeptical that his joint pain is caused by the meds. That's what non-Wegs docs often say, instead of realizing it's active Wegs. Even Wegs specialists can make that mistake. None of our usual meds cause joint pain like that. In fact, if they're working the joint pain should clear up.

As far as his state of mind, it's pretty normal to feel different day to day (or hour to hour!). I feel utter despair some days and the next I feel hopeful again. Some of that is due to pred (current or having been on it), and some just happens with any chronic illness. Wegs is especially difficult because recovery is not a straight line, as many diseases are. With Wegs you can forward, backward or around in circles.

[terrilyn18]

Thanks While we are here I think on check and see what doctors are in this area. I know john hopkins is about two hours from here. My daughter and I have been discussing taking Joe there. But so farf he keeps saying no.

[pberggren1]

JHU is a world class place with a few Wegs specialists including the famous Dr. Phil Seo.

[marta]

LisaMarie, so awesome about your son's game. Wooot wooot!!!! Baby steps is right... that's my new motto in life (before Wegs, I took big giant steps, through the woods and the forests, now it's tiny little baby steps through my living room - although I manged to reorganize - in true Virgo fashion - a large part of my kitchen today... moving very slowly and taking tiny little steps). I hope things clear up for you. Take care of those lungs and the rest of you.

Linda, I have to speak on the joint pain, and probably out of line as I know there are people on this forum who truly suffer with it compared to what I experienced just in the last couple of weeks, but I have to put my two cents in (as I often do.)

I had no joint involvement on my initial diagnosis, but during this last flare it was quite debilitating on some days. The thing is that it moved around on me as well. Some days it was unbearable, some days it was OK, but then it was something else that was hurting like crazy. According to my rheumy, and this is a direct quote "according to your bloodwork, there is nothing wrong with you" (this coming with highly elevated liver function tests, but he was referring to my ANCA, ESR and CRP) but what I was feeling (and he seems to not hear what I'm feeling) was not that of someone who has nothing wrong with them. Within days of getting on the cyclophosphamide (ctx), my joint pain is almost completely gone. Most of what I have left is in my head and sinuses, but that is also going down in severity quite quickly. I know the ctx is nasty but it's the 'big guns' and I think when this crazy disease is active and doing the damage it does on the inside, the big guns are in order. I had to almost demand to be put back on it, but despite the fact that I dread having to be on chemo, I am glad because I can see how quickly it stops the disease progress in it's tracks when taken with the steroids. There, my two cents, for whatever it's worth (a wooden nickel).

Hope all goes well for you and Joe, and that the docs get on it and do the right thing. Follow your gut. Mine has lead me in the right direction throughout this whole process.

[elephant]

Terrilyn18, Tell Joe Elephant says to give JHU a try and see Dr Seo. He is a Weg specialist! I waited too long before I saw a WG specialist and so glad I went to the Cleveland Clinic and confirmed that everything ( meds and symtoms) that my local doc was on the ball. But my local Rhuemy did call the Wegs specialist at Cleveland clinic when things got pretty hairy with me. Joe will feel so much seeing a WG specialist, this disease is rare and tricky. I wish him well!

[Sangye]

Linda, I see Dr Seo at JHU and I also live about 2 hours away. Before I moved to Maryland from Arizona, I did the other options--local rheumy and then Mayo AZ rheumy (but not a Wegs specialist). The local rheumy kept me on ctx for 7-8 months despite the fact that it was causing bone marrow failure. (I only learned of this recently, more than 3 years after it happened). His lack of expertise combined with arrogance and negligence put my life at risk numerous times. The Mayo doc was way better, but wanted me back on high-dose pred, which was absolutely not necessary.

The thing with non-Wegs specialists is that they're not aware of how little they know. They don't realize that only treating hundreds of Weggies provides a reasonable sample size to learn about the highly variable disease. Non-Wegs docs are more likely to overtreat or undertreat--either can cause permanent damage or kill you. We've lost several members in this group this year and every one of them was receiving care from a non-Wegs doc who didn't really grasp the disease.

I actually cried through my entire first appointment with Dr Seo, because he was the first doctor who understood what I was living with. He and the other 2 Wegs specialists at JHU know Wegs and the drugs we take inside and out. They know the latest research because they're the ones doing it. They send you to other JHU specialists who know Wegs in their area (eg ENT). JHU is ranked as the #1 hospital in the US (20 yrs in a row) for a reason. I've never seen anything like those docs. They're brilliant.

In Arizona, Mayo was 3 hrs away across the desert. I was on oxygen and too weak to drive myself. It was a huge ordeal to go, but it's my life we're talking about. When I moved here and learned JHU was only 2 hrs away I couldn't believe my luck. There are fewer than a dozen Wegs specialists in the world and 3 are in my backyard. Personally I couldn't fathom denying myself access to them.
Appointments at the Johns Hopkins Vasculitis Center (http://vasculitis.med.jhu.edu/aboutus/appointments.html)

[JanW]

I can only echo what others have said, Linda. I think that if the doc is messing around with pred and Joe feels any better at all, that's a sign that some inflammation is brewing, no matter what the tests say. Just to give you an example, when I was first diagnosed I had a lot of ankle pain -- so much so I walked with a severe limp. After diagnosis my numbers all got under control, but the pain was still there. I have never been on pred with the disease (my case was moderate -- and slow moving enough -- that it was basically treated surgically as I have a narrowing of thee windpipe), and my doc said, "let's try a medrol pack and if you feel better at all, we will increase your methotrexate." The ankle felt so much better within 24 hours, and we knew that we were on the right track. Simply by raising my dosage by one measly pill -- 2.5 mg -- I was able to get through PT with very little pain, and now I can walk on the ankle again.

[elephant]

JanW, so glad to hear you are doing great. How are long do you think your doctor will keep you on methotrexate?

[JanW]

Thanks, Elephant. Plan now is to reduce in around March -- he likes to get his patients through the depths of the winter without altering dosage. This is simply his practice -- he readily admits that it's not based on rigorous studies, because he feels that people's complain of aches and pains more in cold weather. If we start reducing in March, I may spend no more than a year on meds.

They don't bother me at all, but I'd like to get my nose fixed and I need med free remission for six months in order for that to happen through Dr. Lebovics.

[LisaMarie]

LIsaMarie is the WG in your lungs? Are you having continuous sinus drainage? Headache? Nose Bleeds? Stuffiness? Joint Pain? Just wondering where your at in this journey.
:unsure:..Well I see the lung doc again tomorrow...want to repeat echo cause the last one was a poor study and my last cxr from about 2 weeks ago showed my heart is still enlarged...so if it ios still enlarged tomorrow I want to see an=bout another echo then referral to cardio.....still tired ...taking baby steps...trials off O2 is soso ...my sats stay ok but my hr is still 110-140 depending on what I am doing.....crusty nose with sinus drainage that gets stuck cause my sinus is soo swollen...but at least i can do a sinus rinse without it shooting back out at me...my left side is still swollen hand , knee and ankle...had to take my rings off...hubby not to thrilled but i fingers were turning blue..lol.....staarted snoring loud so see the trach specialist on the 22nd and will see what he says...see the WG specialist on the 10th to discuss next step...cellcept and cytoxin......he made me go back up to 40 mg of pred when i got sick a few weeks ago,,,i still think it was a flare.....i feel a bit better ...achy all over..just normal roller coaster ride...gonna try to start my christmas baking early and do small bits at a time with help from friends....hope all is well with everyone else...have a great week:razz:

[elephant]

I agree LisaMarie..need to get another Echo. Are you on a beta blocker( tenormin) to slow the heart rate. You really sound like your Wegeners is very active. If you start to get worse see if you can get in sooner. I'm am looking forward to your visit with Wg specialist! Thinking about you and keep us updated.:hug3:

[LisaMarie]

:flapper:I will keep ya ll posted....on no meds for my heart rate...so I pray wait and see....night all

[marta]

Lisa Marie,

Sounds like we're on the same roller coaster other than the heart. I'm on 40mg of pred right now and feel like the Pilsbury Dough Boy. My face is bigger than it has ever been. People in my small town of 4500 people who have known me for decades, look at me right in the eyes from a foot away and don't recognize me. It's a little bizzare.

I have decided to hole myself up in my house and also have started doing some early Christmas baking - two batches of cookies so far. Wooo hooo! I just have to hide them immediately after baking as not to have my two cookie monsters eat them up before the end of the week.

Take care of yourself and I hope your doc's visits go well, and your health goes better.

[jola57]

Oh Marta I'm sorry about your experience. I remember it well and it took me a long, long time to get over of this "i'm ashamed of my body" feeling. After 4 years of pred I am on 3mg, so wooo hooo here too, but the weight gain is another matter. It was qiuck and easy to put on but oh so hard to get rid of.

[pberggren1]

Lisa Marie,

Sounds like we're on the same roller coaster other than the heart. I'm on 40mg of pred right now and feel like the Pilsbury Dough Boy. My face is bigger than it has ever been. People in my small town of 4500 people who have known me for decades, look at me right in the eyes from a foot away and don't recognize me. It's a little bizzare.

I have decided to hole myself up in my house and also have started doing some early Christmas baking - two batches of cookies so far. Wooo hooo! I just have to hide them immediately after baking as not to have my two cookie monsters eat them up before the end of the week.

Take care of yourself and I hope your doc's visits go well, and your health goes better.

If only your face is getting bigger then that is much more easy to deal with than other parts of you body exploding like the Stay Puff Marsmallow Man.:laugh:

[Jack]

I suppose I am a bit of a stereotype Engineer when it comes to my own appearance and I have never really bothered much about what clothes I wear, relying on my wife to shop for me and to tell me when I need a hair cut. However, the appearance changes over the years have affected me quite a bit. At first I gained so much weight that I did not recognise myself and seeing my reflection would surprise me. I then lost weight to the extent that my face is sunken and creased so that I look like my grandfather. I feel ashamed of my own appearance and yet I know that this is not a logical reaction. I have always told others that this sort of thing does not matter, but now find it hard to accept my own advice.

[elephant]

I am ashamed of my appearance too. The medicines have really done so much damage and I have scars all over my torso secondary to surgeries. My eye's have aged and I have huge bags under my eye's and I am too young to have. I have thought about getting plastic surgery to get rid of them....I can't stand to look at my face! I know it is vain, but that is how I feel.

[Sangye]

I didn't mind the moon face because it was temporary. But the 60 lb weight gain that I can't budge... it has me increasingly depressed. It's an appearance issue but also a functional issue. With this giant stomach preventing me from bending forward, I struggle to get in and out of my car or to put on my shoes. Simple things are impossible. I'm having a lot of back problems that I know are from the abdominal weight. I've never had them before and my chiropractor and I can't figure them out. It's classic "beer belly" syndrome. Lately it's really got me down. Whose body is this? It still feels alien. :sad:

[drz]

I didn't mind the moon face because it was temporary. But the 60 lb weight gain that I can't budge... it has me increasingly depressed. It's an appearance issue but also a functional issue. With this giant stomach preventing me from bending forward, I struggle to get in and out of my car or to put on my shoes. Simple things are impossible. I'm having a lot of back problems that I know are from the abdominal weight. I've never had them before and my chiropractor and I can't figure them out. It's classic "beer belly" syndrome. Lately it's really got me down. Whose body is this? It still feels alien. :sad:

Apart from the things you mentioned, it bugs me that I got this beer belly without even tasting the beer.

[LisaMarie]

:glare:Trust me this lovely roller coaster of pred doses is killing me as far as body image goes...I finally got to 20 mg feeling ok face and tummy decreaseing ...clothes feeling bettter...then bam wham have to increase to 40mg do to flare and here comes puffy swollen me again....tired after 1pm...I hate pred .....yes I found the hidden stash of fun dip.....i love the white sticks the most...oh where was I ...lol......Lung doc says my lungs are clear but we need to be careful....soo off to see the WG specialist next week.....wish me luck
.....I have found that if i look in the mirror without my glassess on i don't look so puffy dough boyish.....come on laugh......we could look as our glasses as half full...there's more to love...have a great night.:razz:

[jola57]

Oh and I even don't like beer. I hear you Sangye, I never had boobs or cleavage except when pregnant, now I'm 44D, and all the weight is there and in front belly. But hurrray, I can fit into size 14 clothes (pants only, top still 16). I am dropping about 1kg per month now, so at least it is a drop even is it;s modest. At this rate I should be back to my 145lb weight in 5 years.:flapper:

[Sangye]

LOL Well, 5 years isn't that far away.... :laugh: